Lupas... can anyone help?

My partner's mum has been diagnosed with Lupus. She experiences an awful lot of pain and the doctors have pretty much no idea what the disease actually is or how to treat it.

Does anybody have any info on this?

You should be able to find out all you need to know here:

www.uklupus.co.uk...

thebox,

Sorry to hear about your partners mom. Here are some links for you to peruse. They are mainly in the US but the information is still valid. Lupus is a tough bugger, but not unknown so the MD's in the UK should have a decent treatment plan for her. If not, I would reccomend that she insist on seeing a doctor that specilizes in rheumatology or auto immune diseases.


NIH Lupus

www.lupus.org...

www.nlm.nih.gov...

www.rheumatology.org...

Originally posted by thebox
My partner's mum has been diagnosed with Lupus. She experiences an awful lot of pain and the doctors have pretty much no idea what the disease actually is or how to treat it.

Does anybody have any info on this?

Hi!

I have lupus also, it can be tough. If it is in its early stages it can be controlled with lifestyle changes:

Stay out of the sun! If you go out wear a hat and cover up your arms and legs and wear sunglasses. The pain attacks are called flares by sufferers of this condition. I call them solar flares. These attacks are triggered by the sun or florescent lighting. Also she may find that her eyes have become light sensitive during these attacks and she should darken her house for a bit.

Next she should take at least one aspirin a day (after checking with her doctor) to keep her blood thin. One of the effects of lupus is called sticky blood and the aspirin helps to keep this condition at bay. Also the aspirin helps bring down any inflammation in the body, one of the conditons that usually comes on later in the disease. During major flares I take 4 aspirin a day which is not enough and I just got used to the pain. Also, ice packs on a swollen neck or back or over the spine give a lot of instant relief if she is in the inflammation stage.

Eventually many sufferers develop high blood pressure which then causes kidney damage, so she might want to go easy on eating a lot of protein, think chinese with lots of veggies or fish and veggies and rices and pastas. Also the net claims that potatoes, tomatoes, eggplant, bean sprouts are trigger foods for attacks, but I have never noted any correlation from these foods and my flares.

The doctor will probably put her on a course of quinine prescriptions and steroids, these have many side effects which vary greatly between people. After years of this and learning the rules to follow many people go off the medication and try to control it by diet and controlling their environment and with aspirin.

It's a difficult conditon to describe, it varies and takes many different forms but the triggers are the same, so if her symptoms don't match mine, doesn't matter, she should still stay out of the sun and follow the above.

The whole point is to avoid the flares. The flares cause the damage. Flares can last 2 days or 2 months, it is mostly inflammation within the body, so stay cool, out of the sun, use ice packs, take aspirin, eat right, and try to exercise.

Praying for her health,

STM

Thanks for the information guys. It's much appreciated.

We have heard acupuncture can be affective, a lot of 'medical' input has been rather ineffective. We thought it may be advantageous to look into Chinese remedies and such.

PS - STM, great to see a PG video on your signature!

Originally posted by thebox
Thanks for the information guys. It's much appreciated.

We have heard acupuncture can be affective, a lot of 'medical' input has been rather ineffective. We thought it may be advantageous to look into Chinese remedies and such.

PS - STM, great to see a PG video on your signature!

Hi!

I used acupuncture for awhile and it did help relax the muscles which during a flare are tensed constantly from the pain, for some reason it worked better than massages did (maybe all the rubbing in the massage aggravated the inflammation?). The acupuncturist? also prescribed a course of Chinese herbals that were very potent and honestly they just gave me nausea and headaches to add the the pain. Just the acupuncture alone is what helped. I only visited him during flares and as I learned to avoid them he was not needed as much and also I figured out that the ice packs brought down the interior inflammation which was causing the pain, so now I don't visit him at all during my rare flares.

Also, one more bit, sipping on tonic water which contains quinine seems to shorten the length of the flares, it could be just my knowing that quinine medicine is one of the drug courses doctors use makes it seem as though it is helping. The amount of quinine in it is very small.

How is she doing right now? You can tell her for me that people think you're a movie star when you wear sunglasses, a baseball cap and a large men's dress shirt over your outfit, Lol! They think you're a star incognito! Make sure she buys some fun sunglasses! And also, after covering up for awhile she'll notice that her facial lines are going away and the skin on her shoulders, arms and legs will also improve to a great degree! So, there are side benefits to this as I'm 46 and often mistaken for someone in their late 20s!

Glad you liked the music videos, Solsbury Hill always makes me feel good and I wanted to pass it along. Right now I'm looking for a good Christmas video for the second song, still haven't found one that is just right, I'll keep looking.

Say Hey to her for me!

STM

Hi again STM!

She's recovered from her recent flare up and seems to be OK now. It's strange as it seems to come from nowhere.

Thanks again for the advice, she appreciates it. My partner and I are going to attempt to set up an ATS account for her so that she can talk to people like you. She's quite alone with this illness as you know it's very rare and unusual.

I'm going to copy your messages onto a text file and send them to her so she can truly appreciate your positivism on this, it'll cheer her up!

Thank-you!
TB

Do you know if there is a particular reason that she contracted this disease or is it unknown?

The reason I ask is because a lot of women back in the 80's contracted lupus from silicone breast implants. I had these implants for 7 years and had them removed about 10 years ago. My pain went away about 2 months after the removal but even now, my body still shows signs of it because I was unable to be a kidney donor for my mother due to a slight case of hematuria (blood in the urine) that no one could explain the reason for. My ANA count was high, which is one of the signals of the onset of lupus.